Salem Oaks

At Salem Oaks, we believe that people learn better by doing than by being fed information. Think about it. How many lectures from school do you remember? I mean really remember. Now, can you think of an experience you had that taught you something important, that you still remember even though many years have passed? …

Writing goals and expectations at the beginning of each year is a double-edged sword. On one hand, it is critical to provide some semblance of focus in the midst of all the activity around us. On the other, when looking back we see just how uninformed we were. Like trees, we don’t know what is…

She encouraged each of us to find our crack in the expansive ice of rare disease and drive a wedge into it. The effort of everyone continually working their own little crack (science, policy, direct experience, economics, medicine, fundraising, advocacy, or whatever) will eventually weaken the ice enough to shatter it. Together we can beat these diseases. This got me thinking about the contribution of Salem Oaks.

Meet Kyle Bryant On our next episode of Improbable Developments we welcome Kyle Bryant of the Friedreich’s Ataxia Research Alliance (FARA) to discuss his journey as a patient with Friedreich’s Ataxia (FA), as an active patient leader, and in his job as a liaison between the FA community and researchers. After being diagnosed with FA…

I don’t know how this happens. I haven’t been formally in school for 25 years, but my calendar seems totally unable to shake the habit of “getting ready” for the next academic year. And the same seems to be true for Salem Oaks! We have so much planned for the fall that we thought…

We dare to imagine a world in which people are equipped to collaborate to successfully shape the health ecosystem of the future. There is an awful lot of thought behind the mission of Salem Oaks. I’d like to take a few minutes to pull it apart and offer what we believe are the key elements.…

Just over a year ago, I wrote a blog singing the praises of the Rare Drug Development Symposium co-sponsored by Global Genes and the Orphan Disease Center at the University of Penn. In my opinion, there were three defining characteristics of this event that set it apart from the rest. The Right People (Patients, family,…

Many individuals and organizations, including Salem Oaks, talk about patient education and health literacy. But what does it mean to educate a patient? Is the opposite of an educated patient an uneducated patient? Last month Salem Oaks presented a panel discussionat Patients as Partnersin Philadelphia. The objective of the session was to demonstrate the value of educating…

Resources are great. But what if you don’t know that they exist, or where to find them? Patient foundations are an invaluable collection of resources for their respective patient groups. They offer support, various libraries of information and disease facts, resources (financial, medical, community oriented, mental health services, etc.) and, if available, access to patient…